It shouldn’t all be up to us to educate and inform: Improving Hospital Risks for Post polio patients.

Liz Telford and Fleur Rubens Polio Oz Summer Edition 2016

Since PPV was established five years ago, in response to people’s concerns about reduced services and lack of information, many stories have been shared about hospital and other medical experiences. These have included misdiagnoses, anesthesia issues, respiratory difficulties after surgery, inappropriate after surgery care, spinal injury following surgery and even unexpected deaths.

With the poliovirus now no longer seen, hospital staff are not trained in recognizing post polio or how to manage it. The medical profession has overlooked that people who have already contracted polio are now presenting with general medical issues. Medical training does not cover post polio implications and patients are often left to educate their doctors and nursing staff.

While some people report that they have simply provided their anesthetist or surgeon with a flyer about post polio and this has been accepted with good will and a positive outcome, many do not have that information to provide. Others have had doctors reject the information. This can cause anxiety and distress in the patient, and also place him or her at serious risk. It is well documented that people with post polio are likely to have increased sensitivity to opiates, muscle relaxants, sedative and anesthetic drugs leading to recommendations to start low and titrate carefully (Calmes, SH 2014, Lambert DA, Giannouli E, Schmidt BJ 2005, Bruno, RL, 2016). This information is widely available, yet not, apparently, read by doctors.

It is not as well known though that non- paralytic polio also has impacts on the patient’s general health. For people who contracted polio whether it was paralytic or non-paralytic, their rate of hospitalization is 1.5 times greater than the general population. (Kay, L. 2016). This suggests two important factors: hospitals are more likely to encounter people with polio than if they had not had polio, and many of these people will not themselves be aware that their polio history is relevant.

The difference in responses between doctors when provided with information by the patient and the lack of polio knowledge of both doctors and the patients are reasons we believe that it should be the responsibility of the hospital, and not the patient, to ensure that their history of polio is taken into account. The only way to do this is for there to be a standard question at in-take, in the same way that it is standard to ask about heart, diabetes and other conditions and for this to trigger a set of clinical protocols.

Atul Gawande, a professor of surgery at Harvard Medical School is concerned about the complexity of medicine in the modern world. He conducted a study in eight hospitals around the world instituting checklists in surgery situations. He reports complication improvement of 35% and that death rate fell 47%.

One of our compatriots had an unexpected death after surgery in hospital due to a series of inappropriate management events combined with a lack of listening to the patient and the patient’s concerned family member. An outcome following this situation has been the development of a Polio Clinical Alert, which that hospital now attaches to the file of any inpatient that identifies as having history of polio. This identifies some post polio complications and respiratory considerations for medical staff to be aware of and where to get more information.

Regrettably, the hospital does not go as far as taking the initiative and asking the question at intake “Have you ever had polio?” which would trigger the alert. It is still up to the patient or the family to recognize the need to mention that the person has a history of polio.

Unfortunately, many people are unaware that their polio history may be relevant, particularly when there has been no paralysis. As already highlighted, a history of polio, whether or not it resulted in obvious paralysis may be enough to have affected the patient neurologically and affected their muscle, tendon and spinal development in ways that are not externally apparent but may be important to be aware of in surgery.

In his book “The Checklist Manifesto” Gawande notes that the success of the checklist program depends on hospital culture and the implementation process of the checklists, including the ability to implement the checklists. This requires values such as humility and teamwork, as opposed to those of independence and self-sufficiency which are more commonly associated with medicine. He comments that there was sometimes deep resistance to checklists within hospitals. Interestingly, we were told by one hospital that they did not like protocols, as they preferred their doctors to “think for themselves”. We disagree with this view. On the contrary, we think that armed with clear factual information about post polio, doctors are able to think more specifically about what is required. Another said “We wouldn’t make mistakes like that”, perhaps highlighting again the difficulty medical staff have in recognizing the value in planned teamwork and all staff having information.

The “Alert” states for example “Patients who were ventilated with their initial illness (were in an iron lung), who have bulbar dysfunction or who have kyphoscoliosis are particularly at risk of respiratory complications. These patients are frequently very sensitive to sedatives and narcotics so that usual doses may result in respiratory failure and death”. This not only alerts staff to anesthesia and medication issues, but muscular skeletal issues, mobility issues, dysphagia, sleep disorderered breathing, reduced exercise tolerance, risk of heart failure or respiratory failure and other concerns.

These may indicate particular drug management, nursing care in theatre, and post surgery extra physiotherapy, respiratory specialist involvement, occupational therapy and extra nursing care. A home rehabilitation plan may need to be discussed. Teamwork is essential, as is listening to the patient. The question “Have you had polio” on the intake form with a positive response setting off a “Post-polio Protocol” is vital trigger to help staff with critical differences in a patient with a history of polio.

Individuals can help improve hospital systems too. If a hospitalization is known in advance, the patient can provide their hospital with the references below and can ask the staff whether they have systems in place for managing the different issues that may arise for people with post polio. If the answer is no, a follow up letter to the hospital director discussing how information at hand may improve the hospital experience for you. This feedback could encourage the hospital to consider their knowledge and capacity to respond to patients with a history of polio and may help to put a set of protocols into place.